Tag Archives: Schizophrenia

A number of times over the past few years, I’ve written about the need for people with schizophrenia to smoke. Yes, it is dangerous to their physical health but it does help calm their brains. I’ve also written about the cruelty of hospitals that do not accommodate smokers with serious mental illness. It would not be that difficult but they refuse and, in one case, patients cannot even possess tobacco.

As a healthier alternative, I’ve suggested e-cigarettes that provide the needed nicotine but by the safer alternative of vaping. E-cigarettes enables smokers to get their nicotine fix without the dangerous chemical byproducts of burning tobacco. Now, thanks to the FDA and the CDC, that option appears to be on the way out. Fortunately, Health Canada is reserving judgment and I hope that good sense and science will prevail.

At issue is the increase in the number of young people vaping who are developing serious lung problems resulting in seven cases, at time of writing, of death. We are now looking at a ban on e-cigarettes which would be throwing the baby out with the bathwater.

Vaping nicotine should not be done by young people who do not smoke cigarettes nor should they be vaping coloured, flavoured products as it can lead to smoking. But, vaping nicotine may either help people who want to quit or be a healthier substitute for smoking cigarettes. An English study from 2018 found that “e-cigarettes may be a unique harm reduction innovation for smoking relapse prevention. E-cigarettes meet the needs of some ex-smokers by substituting physical, psychological, social, cultural and identity-related aspects of tobacco addiction.”

The National Health Service (NHS) in the UK found “E-cigarettes are 95% less harmful than tobacco and could be prescribed on the NHS in future to help smokers quit,” But what about the lung damage and deaths? According to Alex Bezerow, vice president of scientific affairs for the American Council on Science and Health (ACSH), the damages and deaths caused by vaping were the result of people vaping THC infused oil that they got from the street. “THC is not soluble in water, so it has to be dissolved in oil. The oil of choice is vitamin E acetate” and “Inhaled oil can trigger lipoid pneumonia.”

As these products are purchased from the black market, they may contain other impurities. The FDA and the CDC, he suggests, are allowing myths and fear-mongering to govern their policies. If you are interested in the chemistry of how this damage and deaths is coming about, then Dr Josh Bloom with ACSH provides a simple explanation of the process. If nothing else, Bloom explains how PEZ was initially developed as a means to help people quit smoking.

Why ban e-cigarettes after 6 people died from using the device improperly according to the evidence available now when so many in the US are dying from gun attacks? Guns have killed far more than 6 people and yet the US refuses to do what every other civilized country has done.

A mea culpa as we neglected to mention mothers on mothers day. My fellow advocate in the US always gives a shout out to all the moms who spend mother’s day visiting their ill kids in jails and wherever else they may be found. Katherine Flannery Dering, the author of Shot in the Head A Sister’s Memoir A Brother’s Struggle, published by Bridgeross posted this for mother’s day. It is worth the read.

Mother’s Day

Katherine Flannery Dering

My younger brother Paul suffered from severe and treatment-resistant schizophrenia. He developed the illness at age 16, in 1976, and never really recovered. He was frequently delusional and paranoid, and sometimes threatened violence. But our mother never gave up on him, always believing that one day soon, a cure would be found. It was our job to keep him safe until then.

At the onset of Paul’s illness, psychologists still tossed around terms that blamed the mother in some way for the condition. The terms “smothering mothering” and the “schizophrenic mother” were bandied about in pseudo-scientific literature. At other times mental illness was often blamed on repressed homosexuality or an Oedipal complex – Freudian beliefs still popular in some circles. And in many people’s heads, it was linked to the sufferer’s own sinful ways or to some God-assigned stigma. Mother knew this was nonsense – or tried to believe it was nonsense, and carried on, determined to do her best for her son.

Paul’s care was often hampered by lack of funding and accessibility to good care. Because of the many false beliefs in the general population, insurance companies were permitted to set lower lifetime limits for expenditures on medical care for mental illness and higher co-pays – often 50%. This is how my parents reached the point that they could no longer afford to care for Paul themselves. After about 18 months, after mortgaging the house to the hilt to pay hospital and doctor bills, they were forced to sign him over to be a ward of the state, and he was committed to a state psychiatric hospital. But no sooner was Paul admitted, than hospitals began to close. Little by little, the less severely ill were released.

The nineteen seventies and eighties saw a public zeal to release all mental patients from mental hospitals. I had been living in Minnesota when Paul became ill, but in 1981, I moved back to New York State to be closer to my family after a divorce, and I began to become involved in his care. I found that New York had already begun to empty and close all the state mental hospitals. This wasn’t unique to New York; it was a national trend. Beginning as a trickle, the great emptying had become a torrent by the mid-1980s. The United States had 340 public psychiatric beds available per 100,000 people in 1955; by 2005 there were only 17 beds per 100,000. And hospitals still continue to close every year, across the country. Much of this shrinkage in capacity at psychiatric hospitals during these years was a result, direct or indirect, of the introduction in 1954 of chlorpromazine (Thorazine), the first effective antipsychotic, which made it possible, for the first time, to control the symptoms of schizophrenia and thus discharge some patients. Paul was on Thorazine and similar medications for many years.

By the mid-1980s, the doctors treating Paul were well aware that a neurological component was primary to the disease; it was not a behavioral issue. Doctors were also well aware that not everyone benefitted from the new medications; some still needed long term, supportive care. But despite the rapidly growing body of knowledge that pointed clearly to biological, neurological causes, old stereotypes persisted, and they took form in efforts to release all patients from mental hospitals.

During this time, well-intentioned do-gooders, as my father called them, had sued New York State to close down the huge state institutions, made infamous by investigative reporting on places like Willowbrook, on Long Island, where developmentally disabled people had been mistreated. This movement was intensified by an aspect of Medicaid: its reimbursement schedules were written to withhold payments to large mental institutions, accelerating the closures nationwide. New laws called for smaller, more humane, community-based residential facilities for patients needing long term care. One by one the old hospitals closed; a few homes were built for people with Downs Syndrome and the like, but no one wanted crazy people in their neighborhood. Almost no smaller facilities were built for people like Paul.

The shrinking population of those suffering from the most serious mental illnesses rattled around on a few floors of hulking, ancient hospitals, many of them built a hundred years before as sanitariums for people with TB. Paul’s hospital was one of them, with bars on the windows and double sets of locked doors. We felt bad for him, but we knew he would be unable to care for himself on his own. The former patients who were released often ended up in slumlord- operated single room occupancy buildings (SRO’s) and adult homes, where they were still confused and unable to care for themselves and now had no supervision. The streets of New York and other big cities suddenly were full of mentally ill homeless people wandering around, sleeping in doorways, dying of exposure or getting arrested. Eventually, our prisons filled with mentally ill people who, only twenty-five or thirty years before, would have been humanely cared for in an institution—people who by law should have been cared for in new, smaller, community care facilities.

Every time there was a story in the papers or on TV about one of them, Mother cringed. A mentally ill man pushes someone off a subway platform. A mentally ill homeless person wanders the streets of New York City pestering passers-by, is killed in a bar fight, is found frozen on the streets…

Mother would steel her mouth into a thin line. This will not happen to my son. I couldn’t stop him from going mad, but I can try to make his life as good as possible, within its limits. She volunteered at the hospital library. She stopped by the ward on non-visiting days. My son is not alone, her presence said. I am watching. She joined NAMI, the National Alliance on Mental Illness, a new organization which advocated for both patients and their families. Her focus at that time was always on making the remaining hospitals comfortable for Paul. We couldn’t imagine that he would ever be released.

Determined to keep her son safe, Mother stayed tuned in to public hearings and release meetings – sort of like parole hearings – at the hospital. She showed up for all of them, ready to insist that Paul stay hospitalized. “You can’t just release him. Transfer him to a nicer, smaller place, yes. But I can’t handle him. He’ll set fire to the house. He’ll get into bar fights. He’ll hurt someone,” she told anyone who would listen. She wrote letters to our Congressman and State Assemblyman.

Sunday after Sunday, Mother made the one-hour, forty-five mile, drive up Routes 684 and 22, from White Plains to Harlem Valley Psychiatric Center so often, she could recite every gas station, restaurant, fitness center, farm, antique shop, motel, bank, diner, lumber supply store, army surplus store, church, fast food joint, office park, bakery, school, ice cream stand, car dealership, nursery, and garden supply store along the two-lane state road. My house was about halfway between Paul’s hospital and Mother’s home in White Plains. She would visit Paul in the early afternoon, then stop off at my house for dinner. Her Sunday visits to Paul and me became a ritual.

Mother also made sure we included Paul at all our family gatherings, often making the long drive to pick Paul up for Christmas and Thanksgiving dinner herself, and ferrying him to my house or my sister’s house for the afternoon. For his birthday she made cupcakes for the ward. He’s your brother, she would say to us. We can’t abandon him. He needs us.

Our mother died in 1993—too young, at only 71, leaving advocacy for Paul in the hands of his siblings. I have often thought that if she had taken half as good care of herself as she tried to do for her son, doctors might have dealt with her cardiac condition before her sudden death. I’m ashamed to say we were not as diligent about Paul’s care as she had been; within a year after she died, Paul was released—delusional, confused, and unable to care for himself. We siblings tried to advocate for him with social services agencies, etc., but what he needed was supervised care. It didn’t need to be at the hulking psychiatric hospital, perhaps, but there were no smaller, community-based long term care facilities for him. And so began his downward spiral—group home to ER to group home. We siblings did what we could for him, tried to make sure he got medical care, and stood by him when he developed cancer. Unfortunately, he died at age 48, in 2008. Eleven years later, we still advocate for better care and speak out in his memory.

And on Mother’s Day, I remember my mother and thank her for not only her unstinting efforts to care for her son, but also for teaching her children our responsibility to care for those who need help.

In October, the New England Journal of Medicine published three articles by cardiologist Lisa Rosenbaum. The first is called Liberty versus Need — Our Struggle to Care for People with Serious Mental Illness which contains a section on recovery. The other two articles are listed and linked on the right hand side of that page. Toronto psychiatrist, Dr David Gratzer, brought them to my attention and then I discovered that my friends at Mad In America (MIA) detested the articles so, from both sources, I knew they would be good.

Comments by MIA on the article include:

“This is paternalistic rubbish”

“It is no wonder that people are turning against such white, wealthy elites, as exemplified by recent events such as Brexit and Trump’s election, when so many experts such as this (white, wealthy) psychiatrist think they can impose their view about who is right on common people and their families.”

“The arrogance is a notch higher than you might have realized. The author is a cardiologist.”

Dr Rosenbaum mentions that the Recovery movement began partly to combat stigma by pointing out that US policy makers wanted to show that people could get better. She quotes a 2003 report that said “because recovery will be the common, recognized outcome of mental health services, the stigma surrounding mental illnesses will be reduced, reinforcing the hope of recovery for every individual with a mental illness”

She then quotes psychiatrist/historian, Joel Braslow, stating that “What unifies the (recovery) movement is its self-perception as a radical departure from the past.” Consequently the problem with recovery, she says, is that it becomes antagonistic to and a subtle rebuke of psychiatry. Thus, psychiatrists are seen as having created dependency so that their patients will need them forever. To this she says that “psychiatrists are no more responsible for the chronic needs often associated with schizophrenia, for instance, than medical doctors are for those associated with HIV.”

The needs are there because of the disease and not because of the efforts of those treating the sufferers.

If you defer to the patients’ choice, a positive outcome is guaranteed because success is self-determination. Whatever the patient decides is in his or her best interests is a positive outcome even if objectively, it is not. And she cites recovery maven, Patricia Deegan, who wrote “Although the phenomenon (recovery) will not fit neatly into natural scientific paradigms, those of us who have been disabled know that recovery is real because we have lived it” That reasoning, says Rosenbaum, stifles dissent because who can argue with lived experience.

And she cites Oliver Freudenreich, a German-born psychiatrist who now practices at Massachusetts General Hospital. He pointed out to the author that “It’s a very American idea: if you try hard enough, pull yourself up by the bootstraps, you can do it.”

It is that last statement that bothers me the most because many people cannot recover to the point where they have no deficits and need no medications. Anyone who can’t (and they are in the majority to varying degrees) are made to feel like it is there own fault that they are not better.

Most people are familiar with the concepts put forth years ago by people like Dr Bernie Siegal (Love Medicine and Miracles) and Norman Cousins (Anatomy of an Illness) who talk about curing your diseases with imagery, positive thinking, laughter and relaxation.

These ideas were studied in the case of metastatic breast cancer and there was no improved survival at 5 years. The latest Cochrane metaanalysis concluded that “there is a relative lack of data in this field, and the included trials had reporting or methodological weaknesses and were heterogeneous in terms of interventions and outcome measures.”

A number of years ago, I had the opportunity to meet with a number of women who were involved in one such trial on survival. The most difficult article I’ve ever done because I sat with about 10 women all of whom were terminal and about to die. All of the women told me how desperately they wanted to live and how they hated Bernie Siegal and Norman Cousins. Their philosophy, they said, suggests that if we die from cancer, it will be our fault – that we did not work hard enough to think positive thoughts and to will our cancer away. That is not the case at all. Their will to live was not able to stave off the consequences of advanced metastatic cancer.

Nor is it the case with people with schizophrenia or any other serious mental illness who are not able to throw out their pills and return to good health. Many (or most) will continue to need them and will continue to need support to varying degrees. If they cannot achieve what has been arbitrarily defined as recovery, it will have been their fault. It is not! They should be supported in whatever it takes to keep them as well as they can become.

I keep reading comments from people wondering how anyone could possibly support Donald J Trump. Fact checking his statements demonstrates how wrong he is on much of what he says. And then there are the numerous comparisons of statements that he makes that contradict each other.

Not so surprising, sadly enough, when we look at the people who believe what Robert Whitaker and the anti-psychiatry movement believe.

Put simply, Whitaker and the Mad in America anti-psychiatry folks are adamant that anti-psychotic medication for schizophrenia makes people sick and shortens their lives. Research fails to support these contentions but they persist and the data is ignored. The two latest studies provide overwhelming evidence that anti-psychotics help – but more on that in a moment.

The late Dr William M. Glazer of Yale writing in Psychiatric Times four years ago had this to say of Whitaker:

Should we accept the analysis of a journalist who (1) to my knowledge, has not treated a patient or implemented a study and (2) reaches conclusions that run counter to well-established practice guidelines? Whitaker’s ideological viewpoint, which is implied throughout the book, is that our guidelines are inaccurate and driven by industry and our own need for income—that we are dishonest brokers. Beauty is in the eye of the beholder.

Criticisms of Whitaker have been done by many eminent psychiatrists but my favourite is by blogger Natasha Tracy in Healthyplace.com. Natasha explained why she refused to even read his book with these words:

Sure, he cites studies, he just contraindicates what the study actually proves. And nothing ticks me off more than this because people believe him just because there is a linked study – no one ever bothers to check that the study says whatever Whitaker says it does.

Except, of course, the people who do – the doctors. You know, the people who went to medical school for over a decade. You know, the people actually qualified to understand what all the fancy numbers mean. You know, those people.

And I, for one, rely a lot on what doctors make of medical data and they are the ones most able to refute Whitaker’s claims.

As for the contention by Whitaker and his minions that anti-psychotics make people sick, let’s look at two recent studies.

In 2013, the highly respected British Medical Journal, The Lancet, published a German meta-analysis on the efficacy and side effect profile of all anti-psychotics. The results are summarized simply in a blog by Dr Gerhard Gründer with a link to the original study.

The meta-analysis combined 212 studies with a total of 43,049 patients. All of the anti-psychotics produced improvements that were statistically better than placebo. The best agent was clozapine.

The most recent study was conducted in the Province of Quebec and published in July and was based on real world evaluations of all people prescribed with anti-psychotics for schizophrenia between January 1998 and December 2005. The cohort consisted of 18 869 patients. Outcome measures consisted of mental health event (suicide, hospitalization or emergency visit for mental disorders) and physical health event (death other than suicide, hospitalization or emergency visit for physical disorders).

The researchers pointed out that data from randomized control trials are often limited in terms of generalizability thus real world studies like this one are much more realistic. What they found was that taking anti-psychotics reduced the risk of having either a mental or a physical problem compared to those who discontinued taking them. The only anti-psychotic that performed poorly was quetiapine (seroquel) while clozapine had the best results.

The other criticism from the anti-psychiatry bunch is that taking anti-psychotics results in premature death for people with schizophrenia. Studies have shown that people with schizophrenia do die years earlier than others but the reasons are not well understood. One hypothesis that I mention in my book Schizophrenia Medicine’s Mystery Society’s Shame is discrimination by health care practitioners. Studies show that people with schizophrenia often do not get adequate basic medical care and treatment.

Researchers in Sweden conducted a real world analysis of 21,492 patients with schizophrenia. Subjects were followed up from 2006 through 2010. Data on drug use and outcomes was obtained from national registers.

What was found was that Antipsychotics and antidepressants were associated with a significant reduction in mortality compared with no use. The opposite of what the anti-psychiatry crowd claim. However, there was a clear dose-response curve for benzodiazepine exposure and mortality. More benzos, greater mortality. Note that benzodiazepine drugs are not anti-psychotic medications. They provide short term relief from anxiety, but they are addictive when used over a long period. Which means with long term use people develop tolerance and then crave more. And if they stop them they experience serious withdrawal symptoms. They are never prescribed alone to treat psychosis.

Psychotropic medications prescribed properly to those who need it, are beneficial despite what you may hear from some journalists and a vocal minority.

By Marvin Ross – First published in the Huffington Post on March 9, 2015

One of my pet peeves is the use of the term “mental health problems and issues” to reflect mental illness. Some have told me that if we imply that people are mentally ill then we are stigmatizing them because we are saying that there is something wrong with their brain. Well, there is, and so what? With cancer, we don’t say someone has cell problems and issues but rather they have cancer and we are usually pretty specific because there are so many different forms of cancer each with its own unique outcomes.

And the same goes for mental illness. But, someone recently pointed out to me that the reason we use the vague term “mental health problems and issues” is that what we are seeing is a turf war amongst professionals. And I think that person is right.

When we think of an illness, we think medical doctor. When you are ill, you see an MD who uses diagnostic skills, tests, imaging — a methodology developed over time, to determine what the problem is. Once determined, the MD decides on a course of action (with the patient) which may include referral to another more appropriate health professional (dietitian, counsellor, medical specialist, hospitalization) or medication. The MD is at the apex of the pyramid and the gatekeeper for others.

Now as my cynical friend stated, there is only one relatively finite pot of money for services for the mentally ill and, if we call it an illness, then the medical docs are going to get most of it. Other professionals will get the crumbs. However, if we don’t call it an illness but a problem, then it becomes more appropriate for other professionals like psychologists, social workers and others to be the first line of assessment and treatment.

Last year, one of my blogs upset the Canadian Psychological Association because I pointed out that in 2006, they were concerned that the newly formed Mental Health Commission of Canada would focus on mental illness to the exclusion of mental disorders and behavioural health. That generated a reply from Karen Cohen, the CEO of the CPA.

In November of last year, the British Psychological Society issued a report called Understanding Psychosis and Schizophrenia where they conclude that “psychosis can be understood and treated in the same way as other psychological problems such as anxiety or shyness.” And that “Hearing voices or feeling paranoid are common experiences which can often be a reaction to trauma, abuse or deprivation. Calling them symptoms of mental illness, psychosis or schizophrenia is only one way of thinking about them, with advantages and disadvantages.” And they conclude that “Psychological therapies — talking treatments such as Cognitive Behaviour Therapy (CBT) — are very helpful for many people.”

What they have done is to trivialize schizophrenia and suggest that its treatment be shifted to themselves and that they can uncover the underlying trauma that is the cause over the course of many talk sessions and help.

To be fair, before they had any effective treatments, psychiatrists tried this as well, and it did not work.

First out of the gate to criticize this report were three bloggers on theMental Elf. Keith Laws, a Professor of Cognitive Neuropsychology, analyzed their claim on the efficacy of CBT and found that the research does not support the statement that it is as effective a treatment as medication. Alex Langford, a psychiatry trainee who also studied psychology, challenged their conclusions on medication and pointed out that there is “solid evidence for elevated presynaptic dopamine levels being a key abnormality in psychosis, and there is copious evidence that inhibiting the action of this excess dopamine using antipsychotics leads to clinical improvement in psychosis.” Samei Huda, a Consultant Psychiatrist, points out that the “reduction of psychosis to just hallucinations and delusions is flawed.” He points out that “Cognitive impairment and negative symptoms (depression, lack of enjoyment, lethargy) are important as they often have a bigger effect on social functioning than hallucinations or delusions.”

James Coyne, a psychologist himself and one who is very critical of his colleagues, pointed out that:

Key stakeholders were simply excluded — primary care physicians, social workers, psychiatrists, police and corrections personnel who must make decisions about how to deal with disturbed behavior, and — most importantly — the family members of persons with severe disturbance. There was no check on the psychologists simply slanting the document to conform to their own narrow professional self-interests, which we are asked to accept as ‘expertise’.

Dr Ronald Pies, a psychiatrist, writes that what is missing from the report “is any deep understanding of the psychic suffering occasioned by severe and enduring psychotic states, including but not limited to schizophrenia.” The psychologists see psychosis and schizophrenia simply as hearing voices that others do not and/or having fears or beliefs that those around us do not share. Pies points out that this is a shallow and superficial description of the psychotic experience and does scant justice to the nightmarish reality of severe psychotic states.

In fact, he finds that the psychologists responsible for this report do nothing but trivialize the profound suffering that is psychosis and schizophrenia.

It is well to remember that the prime directive for any physician, including psychiatrists, is not to “be clever”; not to “define abnormal,” not even “to diagnose,” but to reduce suffering.

And while the psychologists lobby for a greater piece of the treatment pie or, as Coyne says slanting to there own “narrow professional self-interests,” and debate with other professionals, the suffering of those with the most serious of mental health problems and issues — real illnesses — continues.

Background

Our ability to see, hear, read, and correctly interpret pre-textual and contextual* information is a brain function independent of I.Q. This ability in the normal population continues to improve (from birth) long past the age that other skills fall off.

This ability allows us to hypothesize the intention and motivation of other people, that is, to be aware of (up to a point of course) the workings of the others mind. That includes the perception of others as having minds, feelings, intentions, motivations, roles, responsibilities, needs.

This allows us to experience empathy, to grasp from this information both what is likely to happen next and what is expected of us in any given situation.
It allows us to formulate an internal social map of which we are a part. It allows us to develop a rational appraisal of cause and effect in our social world. It allows adaptability. New contextual information can be used to modify our internal map.

This ability begins to develop before language. From the moment the infant smiles at mother and mother smiles back.

The brain is an analyzing and organizing machine. It will organize information to formulate cause and effect and predictability. If the information is contradictory or missing it will seek further information. Anxiety/arousal will spur this seeking. Anxiety will continue until the brain is satisfied with its cause/effect organizational answers.

One part of this ability allows us to perceive objects according to their function in the human world. We perceive a chair turned upside down as still a chair because we know the object’s function. A three year-old child with normal pre-textual/contextual ability will approach a toy car and push it along the floor. An autistic child may pick up the car and spin it’s wheels with his fingers. This action may be fascinating to him. For the other child, the human function of a car and car-toy is more important. This child with good pre-textual/contextual information processing skills may race the car, turn corners with the car, stuff a small model in the car, and crash it into another toy.

It is this contextual information processing ability that allows affiliation: Being one of a pair or group and then operating within that group in ways acceptable to that group.

As textual language develops it can complement non-textual skills. But non-textual skills are required to modify and modulate language in social context. The child without, or less adept at pre-textual communication skills, may develop impressive textual skills that lack contextual nuances. His words and sentences are heard as overly formal, and often devoid of cadence, and/or contain unusual cadence and prosody.

As textual skills develop without pre-textual skills and as these are used to understand and interpret the social world around us, and formulate an internal map of cause and effect and expectations, that map will become inflexible, black and white, as stark as the usual text message.

In our average social world, for example, the word “yes” can be spoken in many ways, and guided by many facial and body language cues, to mean anything from a clear affirmative to a hesitant “Maybe” and even, really, “No.” But in text, “yes” is “yes”.

It is possible to reduce the need for pre-textual, contextual information processing skills by social isolation. And, uniquely today, we can retreat to a virtual social world where meaning and organization can be found in text alone. The player of a computer game, even one with multiple players, enters that world as an expressionless alias, an avatar, and engages through text and basic actions. Strategizing may be involved but the actions range simply from aggressive to evasive. If an affiliation is developed it is developed through text and mission.

While isolation protects one from the anxiety of being part of an incomprehensible (unpredictable) social world, it leaves the brain with little to work with as it develops its maps of cause and effect, social organization, expectations of behaviour, and ways of understanding ourselves within this social world.

But for our human brains, this is an imperative. It must do this.

We have long hypothesized that some non-affective psychotic illnesses (setting aside those psychotic illnesses that can be clearly traced to seriously abnormal mood states – e.g.. feelings of exaltation, elation, power, invulnerability, extreme energy leading to a conclusion (an assessment of affiliation) that one must be a prophet, a messenger of God, or God himself) – that non-affective psychotic illnesses are the result of the brain developing a system of cause and effect, an internal map, from whole cloth as it were, because it is experiencing an inability or decay in the ability to process contextual information. The intervening state is anxiety, followed by compensatory behaviours. When these compensatory mechanisms fail, psychosis develops. **

These are the psychotic illnesses that often receive the diagnosis of schizophrenia.

The Survey

Our survey used the internet to reach the family members of people who have developed psychotic illness and received the diagnosis of schizophrenia. 240 completed the survey though it required reading a long introduction and the choices were complicated.

The questions were designed to separate different pathways to psychotic illness, with five choices. Participants could choose one pathway or more than one if a combination was a better fit.

Choice one (1) implied a deficit in pre-textual/contextual information processing from infancy or childhood, with devolution to psychotic illness later.
36 chose this category alone, and 58 alone and in combination with others.

Choice two (2) implied a normal development of pre-textual/contextual information processing through childhood followed by a deterioration of this skill in adolescence.
43 chose this category alone, and 80 alone and in combination with others.

Choice three (3) implied a normal development of pre-textual/contextual information processing through childhood followed by over-interpretation of bits of information, finding meaning and linkages where none exist, or unable to filter out random and coincidental information.
16 chose this category alone, and 33 alone and in combination with others.

Choice four (4) implied a primary problem with emotional regulation: The emotional over reaction to interpersonal events followed by mistaken interpretations of them.
14 chose this category alone, and 56 alone and in combination with others.

Choice five (5) tried to separate those clinical situations in which hallucinations, hearing voices, might have been the first symptom of a developing psychotic illness.
22 chose this category alone, and 58 alone and in combination with others. Though in the comment section many stated that the confession to hearing voices came late in the illness and they then surmised it was an early symptom.

Those who did not choose a category and commented described unusual situations and/or late onset psychosis. (Onset age 40 for example, or many years of drug abuse)

Interpretation and conclusions:

A. Family members are eager to find answers and willing to spend time helping this pursuit.
B. The internet provides a very efficient way of collecting this kind of data and could be used for much wider studies.
C. The largest group of individuals diagnosed with schizophrenia followed a pattern of apparent social success in childhood, followed by developing social failure in adolescence, isolation and retreat, compensatory and seeking behaviours, and then delusions and disorganization.
D. The second largest group appears to have had pre-textual and contextual information processing problems throughout childhood, leading to various degrees of social failure. In adolescence this increases and devolves into psychotic illness.

Less common pathways to psychosis and the diagnosis of schizophrenia may not involve a failure to develop, or a loss of, contextual information processing skills, but rather begin with (3.) an affect regulation disturbance.
(4.) an uninhibited or excessive interpretive mechanism (search for meaning)
(5.) abnormal auditory, visual or tactile experiences.

Though usually 3 to 5 were observed in combinations with 1 or 2.

The diagnosis of schizophrenia is applied to psychotic illnesses that may have different causation and pathways. Our historical attempts to delineate these have relied, not on distinct pathways, but differences in the later psychotic state or outcome.

The results of this survey reinforce the need to consider the diagnosis of schizophrenia as encompassing several different illnesses. Each may have a different set of genetic and epigenetic etiological factors. If we can further delineate these pathways it will help us with early detection, screening tools, focused treatment, perhaps prevention.

Two pathways stood out:
Failure to develop pre-textual and contextual information processing skills in childhood, devolving into psychosis later.
A slippage or decay in this ability in adolescence. (Adolescence is the time of final development of the brain through a process of increasing and reinforcing neural pathways that allow adult function while pruning networks no longer needed.)
­­——————–
*Several words are commonly used to categorize the information being exchanged in human communication beyond, or other than, actual text (words): non-verbal, contextual information, pre-textual communication, pragmatics. The words used reflect the field of enquiry: e.g. ‘pre-textual’ in primate studies refers to forms of communication that precede the development of language (words). The linguists are fond of the word ‘pragmatics’.
We have chosen to use the words ‘pre-textual’ and ‘contextual’. Pre-textual to emphasize how this non-verbal communication precedes text and is primal. Contextual to refer to everything beyond actual text from cadence of text, choice of specific words, to facial expression, eye and pupil movements, to surroundings, situation, role, and history.

In the winter of 1968 I finished a 24-hour shift in the emergency department of a major Toronto Hospital, changed quickly, and walked out into the still dark morning to catch the trolley on Bathurst St. I heard my name called, over and over. I looked for the source. It seemed to come from the electrical wires strung high above the street. I got on the uptown trolley. I looked at my fellow passengers. They were each oblivious, each locked in their own private early morning thoughts within their heavy winter coats.

Sleep deprivation and stress.

I don’t remember the particular stress of that 7 AM to 7 AM shift, but in 24 hours it must have included some bleeding, screaming, and dying, some vomit and rage and insanity, some crying and bewilderment, some failure.

I have no doubt that it is a simple slippage in our brains that can take our thoughts, our inner dialogue, our inner fears and our self-reassurance, and have us hear them, hear them as if either coming from outside our heads, or from an ‘other’ in our heads. In fact, when you think about it, it seems quite remarkable that usually our brains can make a clear distinction between the inner and the outer. So I am not surprised the boundary can be so easily broken in times of high anxiety, fear, stress, sleep-deprivation, psychosis, brain impairment, and trauma.

I am also not surprised that these voices often carry one of two kinds of meaning: accusations, fears, nasty directives or calming, reassuring, comforting messages. The phenomena that might be more difficult to understand are the hearing of conversations, undecipherable mutterings, even crowds shouting at one another. But then again, if our thoughts are often conflicted, unclear, inarticulate, there is no reason to assume thoughts that become voices would be otherwise.

In the many years since 1968 I have talked to hundreds of people who hear or have heard “voices”.

The most common of these is the hypnagogic experience, occurring in the moments between wakefulness and falling asleep, and the hypnopompic experience during the process of wakening. I’m sure we have all experienced, at times, the overlapping of dream states and wakefulness, with sounds and images from from each world colliding. As a psychiatrist though, I usually hear about it from a parent or patient worried that it is a harbinger of something serious. It is not. Though this overlap can be increased by drugs that alter the rhythms of sleep, and by anxiety and stress and sleep deprivation.

Then we have the shy, anxious, overly-selfconscious teenagers who imagine, and then feel, and then think they hear their peers speak about them in the crowded hallways and cafeterias of school. For the boys it is usually an accusation of failure, of stupidity, of weakness, of failed or unwelcome sexuality. For the girls it can have more to do with dress, complexion, blemishes, size, being alien, as well as stupid, a loser. If it is the product of anxiety, social anxiety, in this age group, the teen usually, once away from the experience, understands he or she probably imagined it.

But it is often the reason they refuse to go to school, isolate themselves, become depressed. It is painful for them. And it is alleviated by good counsel and medication.

(Of course there are also instances of groups of teenagers actually systematically taunting and commenting on a schoolmate’s shortcomings)

The next most common cause of hallucinations may be brain impairment, from injury, disease, toxic substances, withdrawal from alcohol, or dementia. And these experiences of imaginary people, imaginary events, fearful reactions, and conversations with visual and auditory hallucinations are scattered, disjointed, intermittent, chaotic, changeable. They also may overwhelm reality, replace it. And if the brain impairment can be treated they go away.

And then the psychotic illnesses: In the exalted state of mania with its feelings of power, of influence, of supreme importance (often accompanied by sleep deprivation), the thought that becomes a voice often belongs, as one might anticipate, to God. And the messages are prophetic and instructive. Usually instructions to share one’s new found wisdom. But sometimes they draw on the Old Testament and include fire, flood, pestilence and vengeful punishment.

Fortunately we now have medicines that quell acute mania in short order, and prevent, if taken regularly, relapses.

In the past it was not uncommon for a manic person to die of exhaustion, pneumonia, exposure, or to wreak some havoc, before coming back to earthbound reality.

And then we have a psychotic depression. Again if the boundary between thought and auditory experience is broken, the thought-voices align with the person’s mood. They are dark, hopeless, foreboding. They speak of death and disease. Usually the sufferer’s death and disease, but sometimes, with some men and women, the death of their family as well.

Undiagnosed and untreated a psychotic depression often leads to tragedy. Again, fortunately, our modern treatments, including ECT, are very effective.

And then we have the schizophrenias. In my experience the hearing of voices is just one part of schizophrenia, a small part, though often very distressing to the sufferer. Many don’t admit to voices until years later. (For over a year it had remained a puzzle why one young man jumped off a school roof. Until he was well enough and he trusted me enough to tell me about the instructions he was receiving at the time.)

And the voices, the transformation of thoughts to an auditory experience, again follow the pattern of the sufferer’s feelings, ideas, distorted interpretations. They are often accusatory in nature, exacerbating guilt and self-loathing. They are sometimes instructive. That is, they might propose an action that will stop the pain and suffering of others. Such as jumping off a roof.

For most people with schizophrenia who do suffer auditory hallucinations the voices are tormenting. They would like them gone. A few get used to them, learn to ignore them. A very few, eventually, allow them to become a comforting background buzz within their otherwise socially isolated lives.

And an equally common symptom of schizophrenia is the reverse: the discomforting conviction that others in your proximity can hear every thought you have. Your thoughts are being broadcast as it were. (The treatment of schizophrenia is addressed in many other blogs on this site.)

Trauma. Abuse. It is again not really surprising that during acute trauma, during the experience of pain, fear and the threat of death and of absolute powerlessness to change this, our brains can take us elsewhere, that they have mechanisms at hand in these dire circumstances to transport us to kinder experiences in our imagination. For a child this may include being a different child with reassuring caregivers, better parents, a much more benevolent world. The more prolonged the abuse the more complex and real the imagined world may become. It could include multiple thought/voices that reassure and comfort. And others that threaten and punish.

The adult who survives this may carry with him or her both a hypersensitivity to threat, to the faces, noises, smells and symbols of threat, quick and exaggerated fear reactions, as well as an ability to call up, to return to, to run to, the other worlds of reassurance and comfort.

This is not schizophrenia. It is PTSD. We don’t have pills that fix this. Though we do have some that may improve sleep, alleviate some anxiety, and quell the most extreme reactions. And to focus on strength, to find a way to deny the memories, thoughts and voices that threaten, punish, and degrade, and to lean on the thoughts and voices that support, comfort and empower, is a good and courageous survival mechanism.

If the voice is comforting and supporting, and not interfering with one’s ability to live and survive and function in our tangible world, I would not want to try to quell it.

All of the above activities make us feel we are doing something about the problem. We are trying. But that is all they do.

The problem with a public campaign to prevent suicides is that it is akin to a public campaign to prevent heart failure. Both are end stages of other processes, but in the case of heart failure we know enough to target smoking, cardiovascular disease, obesity, hypertension, diabetes, rather than “heart failure”. We do not say, “Call this number if your heart is failing.”

We know the demographics of completed suicide. We know the risk factors. We know the specific and usually treatable illnesses that all too frequently lead to suicide. So if we truly want to reduce the actual numbers of people who kill themselves (not threats, small overdoses, passing considerations), then we need to stop wasting resources on “suicide prevention programs” and put them into the detection and treatment of those specific conditions so often responsible for suicide:

Some suicides are bona fide existential decisions, a choice to end one’s life of suffering: terminal illness, intractable pain, total incapacity.

Some suicides are the result of chronic complex social factors: unemployment, divorce, poverty, loss, alcoholism, addictions, isolation, and chronic illness. We can chip away at these factors with better support and rehabilitation services, improved minimum wage, retraining – but there is nothing we can do quickly and easily.

Some youth suicides are the result of impulsivity, intoxication, and an available instrument of death. Impulsivity comes with youth. Parents can keep an eye on intoxication. But we can make sure no instruments of death are available. Guns. Pills. Cars. Get rid of the gun(s) in the house. Lock up the serious drugs. Driving the family car is a privilege, not a right.

Some teen suicides today are the result of public shaming, bullying. Watch for this. Chaperone the parties. Monitor Facebook, Snapchat. No cell phones or internet in the child’s bedroom. It bears repeating: NO cell phones or internet in the child’s bedroom.

And then we have the specific mental illnesses that all too frequently, especially when undetected or under-treated, lead to suicide. These are Depression, Schizophrenia, Bipolar Disease, Severe Anxiety, PTSD, and OCD. And if we really want to make a dent in that suicide statistic then our programs, our money, our resources, should be directed to detection, comprehensive treatment, and monitoring of these illnesses.

In 1968 the police brought a very tall man to the emergency department of a large urban hospital. I quickly learned the man had two PhD’s, one in literature and one in Library Sciences and he was employed as the chief librarian of an important Canadian Library. He was also manic. He could not sit still; he could not stop talking. What spewed from his mouth was a fascinating, pressured, endless run-on sentence of literary quotations, interpretations, criticisms, philosophical observations, and trivia.

The emergency department was designed as an oval, so it was possible to walk the corridor in a continuous circle of approximately 200 feet. This we did. I kept pace as he strode, talked, ranted, and raved, around and around that oval. I carried with me a glass of water and a pocket of tablets in my little white intern’s jacket. Every second or third circuit when he paused briefly to catch his breath I offered him a tablet and a sip of water. He accepted this, swallowed the tablet and continued his journey. I tried to remember some of what he said. I wish I had had a tape recorder handy. His observations roamed over much of English Literature and the history of western thought, in fragments, non sequiturs, creative associations and rhyming couplets.

The tablets in my pocket each contained 100 mg of Chlorpromazine. At four hundred milligrams he slowed at little. By the time I had given him 600 mg he was able to pause. And finally, at perhaps 800 mg and the passage of the better part of an hour, he could sit. The pressure in his speech diminished. He could now absorb his environment. I could now speak a little and he could now hear me.

In 1970 a dishevelled, tall bearded man was brought to a hospital by his family. They had found him, after months of searching, standing outside the Vancouver library in the rain. He had been sleeping rough; he was malnourished; he was not speaking. He was also a lawyer who had disappeared from his office practice, and his family, after announcing he was running for parliament, emptying his bank account, and then being briefly arrested for causing a disturbance. Now he was homeless, depressed, not communicating.

With clean clothes, a soft bed, good food, friendly nurses, and my anti-depressant medication, he was soon talking, more animated. But then he swung into a manic state: over-talking, grandiose, agitated, irritable, demanding. He wouldn’t sit in my office. He stood, paced, demanded I let him leave, ranted invective at my profession, my interpretations of reality, refused my pills. He stood and paced. I sat and listened. He didn’t leave, though the doors were never locked. His family let him know he needed to stay and accept treatment. The law society told him they would not reinstate him without treatment and a doctor’s note. Eventually he sat. Eventually we talked. He accepted my pills, my mood stabilizing medication, lithium. Eventually he was reunited with his family. Eventually he got his licence back. He became an outpatient. He re-established his practice, stayed on his medication, and asked me if I would like to play squash with him.

In 1978 parents brought a young man to see me. He was mute. He had stopped talking altogether. I had a white board in my office, and pads and pencils. The young man was willing to sit and respond to questions by writing out his answers. I found he dare not speak because if he did some tragic event would occur in the world. People would die. He knew this because it had happened. He had become angry, and had taken the Lord’s name in vain, and an earthquake had killed hundreds of people in the Middle East. He agreed to return to live with his parents, to eat and shower and sleep, and to swallow before bed each night the small tablet of Perphenazine I prescribed, and come to see me weekly. He came each week, and each week for an hour he wrote his answers on my white board, and when he tired of that, on the pad of paper I gave him. On his ninth visit I handed him the pad of paper. He put it aside and said, “We don’t need that anymore.”

On a lovely Sunday morning in June of 2008 my wife and I went for a walk. On the journey back I pondered ways to spend a leisurely afternoon. But then we found a frantic woman waiting for us in our parking lot. “John is psychotic again,” she said. John is her brother. An hour later I was in their father’s house. John was on the back porch smoking and pacing. I joined him there. He was agitated, mumbling half sentences in a semi-coherent fashion, some to himself, some to me. Changeable moods swept across him. His eyes would light up and he would tell himself and me that he was Jesus, and he had a mission to save the world, and that I would be forgiven, and then his mood would quickly darken, and he was evil, perhaps the devil himself, and that he should be punished, that he should destroy himself, and then just as quickly back to Jesus. I offered him a wafer of Zydis, a rapidly dissolving form of Olanzapine. He ignored this. His moods and thoughts continued to shift from Jesus to the devil, from good to evil, from a mission to save the world, to the need to destroy himself. I offered the wafer again, and this time he took it and let it dissolve in his mouth. A half hour later he was able to come into the house, and sit, and to sit quietly, and sip tea, and then to speak more rationally. Over the next few hours he became more coherent, better able to focus on the reality at hand. He would stay this night at his father’s, take another Zydis before bed, and they would come and see me in the morning.

It is now 2015. I am astonished to learn that there are people today, even some mental health professionals, who do not believe in the existence of mental illness, nor of the efficacy of psychiatric medications. I suspect that the closest brush they have had with insanity and pharmaceuticals is reading Jack Kerouac and William Burroughs in college, and the only knowledge they have of mental illness, and of the fate of the mentally ill before these medications were developed, has come from Hollywood, or the episode of Murdoch Mysteries I watched last night.

And then there are those who want to make schizophrenia go away, along with psychiatrists and their medications. Some are claiming that it is a misdiagnosis. Most of these folks, they say, are suffering from disorders of entirely psychological cause and explanation, such as DID (Dissociative Identity Disorder, which is the child of Multiple Personality Disorder) or a form of PTSD from childhood trauma, or, on the other hand, simply experiencing just one of the unusual states of mind and perception within the vast normal array of human potential.

Well, I must admit, we psychiatrists continue to struggle with, argue about, investigate, study, re-conceptualize, re-define schizophrenia, while searching for causation and better treatment. In the manner a fever and a rash are not the illness itself, but rather the body’s reaction to a pathogen, many of the symptoms of schizophrenia are the person’s, the brain’s reaction to underlying dysfunction(s). And we are only beginning to understand, at a cellular/pathway/messenger/neuron by neuron level this most complex of organs, the human brain.

There may be as many as six different pathways to this most devastating and misunderstood of illnesses, each with a different genetic vulnerability and epigenetic influence. But we know it happens quite consistently in all cultures and historical times. How we have thought about these people who become so cognitively dysfunctional, so specifically irrational, has varied from culture to culture and age to age. But they have been there and they are there now: In African villages where they might be tied to trees outside the village for families to feed until the mania passes or the patient dies. Suffering in the streets and jails in Dorothea Dix’s time. Burned as witches. Punished in stockades. Banished from villages in Europe and left to wander the country side. Poets (who undoubtedly never had to live with an insane person) speculating that insanity may be simply a form of creativity, and being someone more in tune with the rhythms of the invisible world than the rest of us. Yes, we’ve been there before.

And then in our part of the world between 1880 and 1980 mostly residing in Asylums and Mental Hospitals. And now, of course, as described in previous essays by Marvin Ross and myself, we find that vast numbers of people so afflicted are being housed in, have been returned to our jails and prisons, and kept away from public view .

(In considering historical and cross-cultural data it is always well to remember that life expectancy for the general population was about 40 years in 1850’s North America, 60 today in India, less than 50 today in Africa, and in all times and places, considerably less for the mentally ill, the poor, and the indigent.)

As Marvin Ross pointed out recently, the doctors who observed and described schizophrenia as a progressive disease with inevitable poor outcome, were doing so at a time when we had no effective treatment. They were not wrong in their observations. Untreated schizophrenia invariably leads to a progressive deterioration of function, early death, and sometimes violence. Although there are always, as with everything in this world, a few exceptions. A few.

Only 65 years have passed since we discovered the effectiveness of anti-psychotic medication, starting with the famous Chlorpromazine (Largactil, Thorazine) in France. And only 60 years have passed (1954) since this drug was first introduced to North America. And because we were so tentative with these drugs at first, often weaning our patients off them after three months of recovery without relapse (1965), and when that didn’t work, waiting six months, then a year (1970) , then making that two years, then five, then ten, (1975) and with our patients sometimes lost to follow-up, and stopping the medications themselves, some because of side-effects, and relapsing and being readmitted, and then starting over – it really has been only about 20 to 30 years now that we have concluded that most (if not all) people who suffer from schizophrenia will need to take these medications for life in order to remain stable and well. And this has finally allowed us to have, as I have had, the opportunity to see some people take these medications regularly for 30 years, and observe that with very consistent treatment (anti-psychotic medication), a good support system (usually family and some counseling), schizophrenia need not be a progressive illness with a bad outcome.